feelings you mentioned including guilt and the fear of tempting fate. I haven't had my surgery yet, and have lived flat on one side and with an awkward implant on the other side for three years. So I am anxiously awaiting surgery this Monday morning. A good friend very simply said, "I know this surgery will make you feel happier in your body and nobody should feel guilty for wanting to feel happy, as long as they're not hurting others." I don't know if that will resonate with you, but it certainly has helped me. If not you, perhaps it can help ease somebody else's guilt. I hope you find peace as you turn the page on this chapter.

Janetanned - thanks so much for the info. Dr Serletti is doing my surgery, he did both my sisters (preventative - they have the brace mutation too). My daughter will also be home for a few days when I get home, she is 21, a medical lab sciences major at UDel, I think the best medicine for my recovery is having the kids home. My hubby is awesome, just not the same as having the kids home.

Thanks everyone! and best wishes for everyone recovering and scheduled for upcoming surgery.

Hi all. Just a quicknote to Honeybadger and mmcmom... looking forward to hearing from you both in a few days with news of your successful surgeries and the early road to recovery. We will all be rooting for you.

Hello my sisters : I had my DIEP in June 2014. Although I did have complications, I am still so happy with my choice. I wish all scheduled for surgery this week prayers and hugs!

I did have radiation prior to the DIEP, and I did lose skin, which resulted in skin grafting. So now I finally scheduled my Stage 2 for August 17th, and once again I am petrified. I am not sure why....but it will be another 4 hrs surgery. I am 55yr and I live alone. It is difficult to recover alone. I have not told my family yet. It is difficult to understand our personal choices.

p.s. I still have hard basketball stomach, which causes pain for me everyday. I do have mesh, but it is synthetic. Ask your PS to use natural pig skin mesh if you need it. My PS stated that in order for me to correct, I would have to open abdomen, and then PS would have to cut all skin from plastic mesh and then replace it.

I would not wait too long to fix the issue! I waited 3 yr. I am not ready to do this...maybe never at this point

Well, I'm off this morning for the touch up surgery with Dr. Hofer in Toronto. Some lipo suction to even out the two sides, getting rid of the dog tags and new nipples. I'll also ask to have the abdominal scar reduced if possible. I'll have general anesthetic, but it's only a two hour surgery so should be back home this afternoon. Wish me luck!

Well, I'm off this morning for the touch up surgery with Dr. Hofer in Toronto. Some lipo suction to even out the two sides, getting rid of the dog tags and new nipples. I'll also ask to have the abdominal scar reduced if possible. I'll have general anesthetic, but it's only a two hour surgery so should be back home this afternoon. Wish me luck!

jeanwash--Although I did not wait as long as you did, I had the same fears. After a UMX, chemo, and rads I am feeling so good. Do I really want to do this? But finding mastectomy bras and swimsuits that fit was so frustrating. I was hard to fit before and trying to match my remaining breast was even worse . Plus it limited clothes and swimsuits I could wear. I decided at 44 I was too young to deal with that the rest of my life so I scheduled my surgery. My doctor had an 8 month wait for surgery. I could not let myself think about the surgery because I could have talked myself out of it so easily! In fact about 9:30 the night before surgery I told my husband "Maybe I shouldn't do this . Am I crazy to have surgery since I'm so healthy?". Thankfully he talked me down off the ledge so to speak and I'm so glad that I had the surgery . I didn't realize the psychological impact being flat on one side had on me. I haven't even had stage 2 yet and already am so happy with my results! I was back into easy normal activities after about 2 and a half weeks . My recovery was pretty easy . I love my flat stomach and can't wait for stage 2 to make the breasts look the same! Good luck to you!!

grateful99 - I wish you the best for your surgery! Let us know how it goes! I'm especially interested in how you feel afterwards and your recovery time.

My stage 2 scheduled Aug 4 includes placing mesh over my abdominal wall due to my bulging hard basketball stomach. Has anyone had to do this? My stage one Deip flap was March 8,and the chemo really did a number on my recovery. Everything started to swell in my abdomen after my second treatment.

LIRI-RI - good luck with your stage 2. Why are you asking for pig skin mesh? I don't know anything about mesh and I just found out this week that I will need it. I would appreciate you sharing any information you know about mesh. Thsnks

Thank you for this thread. My name is Sarah and I'm 38. I have three wonderful children aged 6,9,11. My prophylactic mastectomy diep flap is scheduled for Sept. 25.

I'm super nervous and hope I'm making the right decision for the flap. Exercise is a huge part of my life and a big concern I have is recovery time long term. The idea that my core will be forever changed and possible complications can go on forever hs scary. But I love the idea of using my own tissue for reconstruction. I hoping to feel less alone and hear some good outcomes for this type of surgery.

I was taken into pre-op prep room and slept for an hour while waiting for delayed surgery (someone else was ahead of me). When I woke up, I was given ice to suck on as I hadn't had anything to eat or drink since the night before (12 hours). Then a nurse inserted an IV needle into the back of my hand and the PS came in to mark on my body where he was going to work. Two nipples, some fat injection above the breasts and into a place where there was a dip, as well as the dog ears and the scar revision on my abdomen. He also needed to take out two sutures from DIEP part one where they were bothering me in the abdomen. Meanwhile the nurse gave me an injection of Heparin (blood thinner).

Next, someone wheeled me into the operating theatre where I saw 7 people not counting the PS! It's a teaching hospital, so some of them were fellows, other plastic surgeons and nurses as well as the anesthesiologist and his assistant. They gave me oxygen and and that's all I remember.

I woke up 2.5 hours after going into surgery and slept another three hours after that. I was given water to drink and 1 Tylenol 3 with codeine three times at 2 p.m., 5:30 and 8 pm. and got a prescription for 25 more to take home with my discharge papers. I tried going pee, but I think my bladder was still asleep from the anesthetic. I asked for dinner about 6 p.m. but wasn't really hungry. Ate anyway. Then started getting dressed (alone, no help) and my daughter in law came to pick me up. (You need someone to take you in, or they won't operate, and then take you home. I got in a wheel chair, only to the exit to make things easier. We took the public transit on the way in but a taxi back.) I also got some supplies to take home.

Pain is manageable with Tylenol 3 every four hours. I'm allowed shower tomorrow but no baths or swimming for six weeks while the nipples are healing. There are cups over the nipples and gauze. Clear tape over the abdominal incision and where the PS took out the dog ears. This part is still leaking a bit but I don't have drains. I woke up tonight with the duvet bloody from the leak, so I should have covered myself with a towel. No one told me. I changed the gauze over the nipples from where some of the leak came. The rest from the incision.

My throat is dry and raw right now from the tube, I'm guessing so I'm drinking lots of water. And I'm sleeping on my back, not sure how long I'll have to do that. Tomorrow I will call the office to make an appointment for a check up in two weeks. I will probably call the support nurse and ask more questions that will come up. I will post more here when I think of something.

Hi Ladies, I had my double mastectomy and DIEP Flap surgery on May 22nd. It felt like a Mack Truck hit me. I was lucky that the hospital was full so I spent my six days in ICU with all the nurses visiting me because I was probably the healthiest person on the floor. I was treated like a queen. I did have my doubts at the beginning but right around June 28th things took a turn for the better and I don't regret this decision at all. I am extremely happy with the results. I had a problem with the pain killers,tried them all and realized I can't take them they make me very nauseous I lost a total of 26 pounds because I couldn't eat. Survived on protein shakes for the protein and healing. I also felt very guilty choosing this surgery since I have a 10 and 12 year old knowing that it was a long recovery. I think in the long run using my own flesh was the best decision for me and my family. I was also so happy there was no lymph node involvement. I really got lucky because I had two 3D mammograms two sonograms and one MRI that showed 2 tumors 1 cm and 1.3 cm. My breast surgeon suggested that I have a unilateral mastectomy with DIEP Flap. I decided to have a bilateral mastectomy with DIEP Flap. When all was said and done the unhealthy breast had 4 tumors 2.3 cm 1.3 m. 0.8 cm and 0.5 cm with DCIS all over. I was very lucky that it did not spread to my lymph nodes.

The only problem is that I have a Seroma under one of my breasts and I am seeing my PS tomorrow, my oncologist wanted me to visit the PS before chemo starts next week. It is not infected but looks like an oval shape wound that weeps very little. I did speak to the Physicians assistant for the PS and she doesn't think it should be aspirated it in case of infection. So we will see how that goes. I truly have to say I am very happy with the results my breasts were so huge the Breast Surgeon came out to tell my husband that both breasts weighed 12 pounds all together. I now have a nice B cup - they look great in clothes lol. My PS mentioned that phase 2 is elective so I don't know if my insurance will cover it since it is elective. If I stopped here I would be happy. Good Luck to everyone and thank you JDBayton for putting this thread together I really appreciate it.

Onto my next journey chemo starts next week 6 rounds 21 days apart and then Herceptin 21 days apart for a year. One step at a time deep breathing lol! But to all you ladies it worked out well for me. Good Luck on all your decisions you make. We truly are lucky we have all the decisions so we can make the best ones for ourselves.

Hi Sarah,
I'm replying to your concerns about being active after your DIEP. It's been seven weeks since my surgery and yesterday I went for a run for the first time. Someone on this thread had said she continued to use her abdominal binder while exercising so I did that and although I was a little warmer than I wanted to be, it did feel more supported that way. I ran about 2 1/2 miles, and I'm looking forward to building my base. Next week I'll return to yoga classes.
Good luck to you! Hope this helps.

Thank you Songbird! Thank you for posting your journey... and happy to see that you are doing well. I am nervously moving forward.

My update...Today is my preop visit and tests. Last week I had my CT scan if abdomen to check blood vessels. I still have questions and hesitation so doctor has scheduled another visit 3 days before surgery to go over my questions. Dr had said I will need breast lift and reduction on remaining breast for symmetry. Sounds logical but now I am not on board with the idea at all. I don't want to tempt fate and muck around with my good breast tissue. The breast lift only I can deal with as that is only skin, I believe...but cutting breast. No thank you . I willkeep everyone posted.., surgery is 10 days way. Yikes!!

jeanwash - breast reduction almost always involves cutting, unless it's a small reduction that can be handled with liposuction. You don't want a scar on the upper breast skin where it will show with a low neckline, so they move the nipple/areola up higher and remove tissue and skin from the lower part of the breast, sewing the incision together to tighten things up.

I need to decide whether to do this also - my reconstructed breast is about a cup size smaller (~1/2 pound) and 2 inches higher, and the nipple is at least 4 inches higher than my other one. With a bra on, it isn't glaringly obvious, but enough that I'm a bit self-conscious about it. I have 5 months to think about it....

Pain is manageable with one Tylenol 3 (with Codeine) every four or five hours.

There is still some bleeding from one of the nipples, so I changed the dressing a couple of times today.

I am concerned about low urine output considering how much water I drink, and have searched online and emailed a nurse for information. It seems that as long as I'm producing some amount (slow and very little) and don't have a fever, it's normal after general anesthetic. After DIEP 1, I had a catheter, so had no idea how much my kidneys were producing. It's now more than 12 hours after surgery so it is a worry. Has anyone experienced this as well? I would recommend to anyone going in for stage two to stay at the hospital (if possible) until the bladder is working well. It's easier than having to go to emergency after you've been discharged. Some hospitals have a rule of "no pee, no leave" but at Toronto General that has not been my experience. I was not seen post op by my ps or any of the fellows assisting. I should have insisted but they were busy with another surgery. My follow up is in two weeks.

I am able to do all the self care, walk upstairs, cook, do laundry and so on. I have not been out yet and walk hunched a bit. Ordered some food online. Shower tomorrow.

gratefull99 - Thank you do much for the update on your Deip stage 2 surgery. Imglad you are able to get up and do some basic things around the house. Keep drinking that water! Hope you continue to get better each day!

I had three big plums yesterday and up chucked them all in the middle of the night. I guess my stomach is still not able to handle some things. Be gentle with it for a few days. And ask for information. I didn't get very much and have forgotten from the last time. It still is a big surgery because of the general anesthetic.

Day 3, doing ok, off the Boles and catheter. Pain is more of a discomfort, I'm going to walk today, yay! Was sick yesterday, but that seems manageable. Also had a terrible headache. The Penn nurses are amazing and I have a beautiful view from my window, the UPenn original dorms, and a courtyard.

I had my first visit with my PS yesterday. I have decided to have a double mastectomy with immediate reconstruction. I am eligible for skin and nipple sparing . My question is: I thought I wanted to do the flap with my mastectomy. My PS said he would but preferred to insert the tissue expander and allow for healing first. He would then go in 3-4 months later and remove the expander and perform the flap. For those that has had it either way please give your opinions. Immediate or postponed?

purplestargazer- my doctor said the same thing, I am in the middle of it. My actual Diep flap will be Sept 18. Neither doctor I saw here in Dallas wanted to do it right away, and the one I went with wouldn't at all. I sort of wish he could have done it all at once, because I feel like my life is on hold until it's done- I was starting to look for a job when this all started, and didn't want to start a job and say "hey, I have to have x weeks off for surgery" to a new job. These docs say the aesthetics was better if you wait, I know other's doctors said the opposite. I don't like the expanders at all but I guess I see their point. Not exactly sure what to tell you since I'm not done yet, but I know several in my area who had it done this way and it works as well.

purplestargazer-I had it all done at once and that's the way I would advise anyone who asked. Delaying the recon means you'll have stage 1A (MX & expander placement), stage 1B (flap surgery), stage 2 (symmetry & contouring) when you could've gotten by with just 2 surgeries. Each one requires time out of work & down time at home where you will be restricted on what you can do. Not to mention the problems so many of us have with expanders. They do the MX and flap surgery all at once at the center for restorative breast surgery in New Orleans (aka NOLA) as well as at other centers. Makes me wonder how many microsurgeons will be working on you at once. At NOLA it's 1 breast surgeon & 2 microsurgeons which means your surgery time is shorter than if you only had 1 microsurgeon. That would be a question I would ask – how many microsurgeons will be working on me at once? If there's only 1 that could be the reason why they do it that way – but that's at least an additional 3 months recovery added to your journey Plus that extra surgery. If you haven't looked at NOLA, you may want to – flap reconstructions are pretty much all they do there and their results are amazing, not to mention their significantly lower than the national average flap failure rate and infection rate

mmcmom - Glad to hear you are on the road to recovery! I found Penn nurses to be terrific as well. My overall care was terrific! Will you have PT and OT aftercare? They made going home so much easier.

Purplestargazer - I had a BMX and immediate DIEP reconstruction. My BS offered both immediate and delayed. I wanted everything done at once. I was afraid that I would not do reconstruction if I had to wait. I was not looking forward to one surgery, so two major surgeries seemed too much to deal with. Also, I never had to deal with being flat. I went into surgery with breasts and came out of surgery with breasts. It was a difficult, but well worth it in my opinion.

Lula- how does it work to use NOLA when you are not in the area? Who takes care of followup and all that?

Actually, the trick for insurance to cover this is not having someone in the area who can do it, as if I were in a small town in TX instead of Dallas. There are at least 3 surgeons in Dallas who do this regularly, so I'm not sure insurance would cover it. The people who have gone to my doctor are very happy with the results.